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Documentary follows the death of a York woman with autism and ALS

Michele DeMeo was given eight months to live in 2010, but she's still alive and educating others.

By TERESA McMINN For the Daily Record/Sunday News

Updated:
02/26/2013 12:46:30 PM EST

York, PA -

Michele DeMeo has a matter-of-fact tone when she talks of her death, which doctors expected to have happened by now.

Without shedding a tear, she describes in detail the slow loss of her abilities to breathe, see and hear.

When she was 15 years old, she left home because she wasn't going to deny she was gay. She tells that story without showing emotion.

And DeMeo, 39, of York, says her autism -- which rendered her socially paralyzed as a child -- is a practical condition that's served her well, allowed her analytical brain to focus on daily tasks without interference from feelings such as worry, fear and sadness.

But beneath her calm persona, a desperate yearning surfaces as she talks between labored breaths of her passion.

While DeMeo can't mourn the imminent end of her life, she grieves for one more day of purpose.

"I was made to work," she said of her existence. "I just want my job back."

She knows that will never happen.

DeMeo was diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig's disease. Doctors told her she had up to eight months to live in 2010. While she outlived that expectation, she developed another disease.

"I have ALS and cancer. I'm dying," she said. She also recently developed pneumonia. "I'm declining steadily."

'A logical move'

DeMeo was raised in a low-income, tough and abusive environment.

"It was a rough childhood," she said.

School posed additional problems.

"As a kid, I rarely spoke. I didn't socialize ... I daydreamed," she said, adding school officials at the time thought she'd "grow out of it."

She was diagnosed as having high-functioning autism and Asperger's syndrome about 10 years ago.

"They didn't know what it was when I was little," DeMeo said. "I had very little education."

She left home at age 15.

Michele DeMeo moves from a walker to her power chair so that she can move around her home in downtown York. (YORK DAILY RECORD/SUNDAY NEWS - PAUL KUEHNEL)

"My father suspected I was gay. I wasn't gonna deny it," she said.

"It wasn't emotional for me. It was a fact," DeMeo said, adding her autism is a gift that helped her cope with a situation other folks would view as a crisis. "It provided me a different way of thinking of things."

She lived with friends, worked at McDonald's and quit high school.

And then she realized, "What could I do without an education."

She began to research job openings in hospitals.

"It was a logical move," she said.

DeMeo later received a general equivalency degree, took five courses at Cornell University's Industrial and Labor Relations off-campus program, studied at Somerset Technical Institute and worked in hospitals in New Jersey and New York.

'Devastating news'

In 2005, DeMeo took a job as sterile processing department manager at Memorial Hospital in Spring Garden Township.

She loved her job and grew to view staff members at Memorial as her family.

"It is the most important place I ever worked," she said adding Sally Dixon, chief executive officer of Memorial Hospital, "is an incredible leader and I have the utmost respect for her."

Last year, DeMeo became too sick to work.

"I had complications with my feeding tube," she said. "Everyone thought I was gonna die. I'm supposed to be dead."

Hospital officials told her she had to take a medical leave of absence from work.

Michele DeMeo at her home in York Wednesday. (YORK DAILY RECORD/SUNDAY NEWS - PAUL KUEHNEL)

"I sobbed. They cried ... It was the most devastating news," she said. "I was more upset losing my job than hearing I was going to die."

Today, she says her employers made the right decision.

"It needed to happen," DeMeo said. "They were kind about it."

Dixon said DeMeo was passionate about her work.

"She always gave 120 (percent) and was always looking for additional ways to contribute to the overall success of Memorial," Dixon said via email. "She was a very committed and loyal employee. During her six years at Memorial, she made many improvements to our processes both in and out of sterile processing."

Educating others

During her career in the medical field, DeMeo's professional record grew to include positions on the Devices Good Manufacturing Practices Advisory Committee of the Food and Drug Administration. She also is an approved instructor for the International Association of Healthcare Central Services Materiel Management.

DeMeo also helped draft a bill to regulate certification for sterile processing in Pennsylvania.

"It was always viewed as a support job," she said.

She also wrote several publications and books, including "The Beauty of a Slow Death: Understanding Acceptance and Learning to Live Differently Can Lead to Peace."

Last month, she spoke at New York University's medical center and continues to work as a clinical consultant in the sterile processing field.

"I believe that her accomplishments are very significant," Dixon said. "She authored numerous articles and was recruited by the (Centers for Disease Control and Prevention) to serve on one of their advisory committees."

"Sterile processing is extremely important to patient safety and patient outcomes and Michele has been an advocate for recognition of this fact," Dixon said, adding DeMeo spent much time "educating and encouraging others in this career path."

The documentary

New York director Joe Nardelli learned from his friend, a doctor in York County, of DeMeo's story.

Nardelli and DeMeo met in April and he started work on "Love, Loss & Life -- The Beauty of a Slow Death." The documentary focuses on the beginning and preparation for the end of DeMeo's life.

Nardelli, a quadruple bypass heart surgery survivor whose mother died about two years ago after a long illness, wanted to create a film that explores how a family copes when a loved one is dying.

"(DeMeo) was given a death sentence," he said. "But she has such an enormous constitution that she's driving right through this diagnosis."

Making the film, which examines truth of humanity and vulnerability, was among "the hardest things I've done in my life," he said.

"We get to see her soul in this film ... it's a lot to take in," Nardelli said. "I shed a lot of tears."

About the film

The documentary film "Love, Loss & Life -- The Beauty of a Slow Death" is inspired by Michele DeMeo, directed and photographed by Joe Nardelli. A preview for the film is set for Dec. 19. The documentary is expected to premiere in March or April.